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Topic: hemicrania continua (Read 418 times) |
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Greg2004
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hemicrania continua
« on: Jun 13th, 2004, 9:47am » |
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Does anybody on here have hemicrania continua, and/or know if there is recent information/reserach about it?
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eyes_afire
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Re: hemicrania continua
« Reply #1 on: Jun 13th, 2004, 11:13am » |
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Hi Greg,
I don't recall anyone on this site having hemicrania continua... but then again diagnosing it sounds much more foggy and controversial than diagnosing cluster headaches. Here's some of the best info I've found... but it's not exactly new research:
http://www.upstate.edu/neurology/haas/hphemi.htm
The good news is that it seems that some meds are successful in treating it. I hope this helps.
--- Steve
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Still around... in a brand new world now...
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pubgirl
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This is quite a good link too:
http://www.achenet.org/articles/6.php
The difficulty I have come across is that you can get hemicrania continua symptoms if you are a Ch sufferer using too many painkillers or narcotics so there is a constant background ache as well as the CH attacks. Also occasional chronic sufferers have constant Kip1/2/shadows overlaid with more severe attacks which can look like hemicrania continua.
The best diagnosis is usually what treatment works i.e. the usual indomethacin diagnostic rule out which so many neuros fail to try
Wendy
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Greg2004
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Re: hemicrania continua
« Reply #3 on: Jun 13th, 2004, 6:47pm » |
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What are Kip 1/2 shadows?
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Lizzie2
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Re: hemicrania continua
« Reply #4 on: Jun 13th, 2004, 7:15pm » |
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Hey Greg,
Unrelated or maybe related to my diagnosis of CH, my neuro now does not know if I have something called New Daily Persistent Headache or Hemicrania Continua. I do not respond to indomethacin which is how hemicrania continua is usually successfully treated. When I first had a consult with the headache center about 3 years ago, they wanted to rule out one or the other of those conditions, so they put me on indomethacin, but it didn't do anything for me so they wound up with the diagnosis of NDPH. However, when I was diagnosed with CH...now they don't know. Unfortunately, my constant headache doesn't respond to anything anyways...so the name of what we call it doesn't matter a whole lot! Just that it hurts!!
I do have some info on it, so if you have questions, I can try to answer as best I can.
Hang in there,
Lizzie
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Greg2004
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Re: hemicrania continua
« Reply #5 on: Jun 13th, 2004, 7:19pm » |
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Hey Lizzie,
Love to find out more. I'm not sure that indomethacin is helping, its relieved my constant pain a little bit but I still get jabs, and my ere, forehead and sinus still hurts on my right side. I've noticed and improvement, but not total.
Did indomethacin have somne effect, or is your CH just as bad? and do you get jabs and jolts?
Greg
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Lizzie2
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Re: hemicrania continua
« Reply #6 on: Jun 13th, 2004, 7:27pm » |
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Hi Greg,
I didn't notice any change when I first took the indomethacin. I now have it prescribed to take about 45 minutes before I exercise because of the stabbing headaches I get during that. I haven't gotten back into the routine of exercising yet, so I really haven't tried it out to see if it helps. I think those would be like the "jabs" and "jolts" you are talking about. My full blown CH's are kind of like those shorter length stabs blown into an hour or more at times. There are times, however, when I have the shorter lasting stabbing headaches that may be as long as 15 minutes, but often are as short as just a couple of minutes. Does that sound familiar?
For an explanation of the kip scale...click on the button with that name on the left side of your screen. When Wendy was describing a Kip 1/2 shadow, she is talking about maybe either a light headache or maybe associated cluster symptoms without a headache, but it doesn't get to the full blown cluster headache level. For instance, I consider my shadows to be when my right eye is tearing and my right side of my nose is stuffy, but maybe I have just a mild headache and no full blown CH. It just depends. My type of chronic daily headache (whatever it is....NDPH or HC) takes priority over CH shadows because that pain level is always significant for me. However, when I get a full blown cluster headache or even those shorter lasting stabbing headaches, you can bet they take priority over anything else going on in my life at the time!!
Did they give you anything to counteract the stomach problems that can occur with the indomethacin? Such as nexium, prilosec, protonix, or anything like that? Just curious.
Lizzie
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Gator
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Re: hemicrania continua
« Reply #7 on: Jun 14th, 2004, 4:02pm » |
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Here are the latest Classification Guidelines from the International Headache Society (IHS). You won't be able to print them out, but you can download and read the thing. Could help people to recognise what they have.
http://216.25.100.131/ihscommon/guidelines/pdfs/ihc_II_main_no_print.pdf
Gator
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